Venetoclax day 2: Morning blood test fine and... - CLL Support

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Venetoclax day 2

Fowey2009 profile image
4 Replies

Morning blood test fine and tablet taken. Discharged from hospital with 5 days supply of venetoclax and a truck load of other drugs (antivirals etc)

Feeling fine (if tired from poor sleep in hospital)

Only one pressing issue - given how much fluid you have to take in how do you manage to travel or do anything which takes you away from the toilet?

Will update next week after dosage increase.

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Fowey2009
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closh profile image
closh

Hi Fowey

I think the usual recommendation is 2.5 - 3.5l (2-3 quarts) every 24 hours. I just kept a water bottle with me during ramp up and needed toilet stops every hour or so for the first 2 weeks. After that, it's less important as there's a lot less lymphocytes left to kill and flush away. You should still drink ample water though - it's good for general health as well as cleansing our drugs and byproducts.

I didn't have any major issues with travel etc. I just kept in mind where nearby toilets would be and had a lot of toilet stops (aisle seat in airplanes was good too).

I also had only 1 coffee a day and no alcohol for the first couple of weeks. Best to avoid things that dehydrate you.

Good luck. I found Venetoclax really easy to take and it's very effective.

Graham

Fowey2009 profile image
Fowey2009 in reply to closh

Many thanks Graham.

All the very best

Beryl

Smakwater profile image
Smakwater

Fowey2009,

I am 185 lbs, and the only other medications that I take are omeprosole and allopurinol. What is working for me relative to moderate activity is to drink a 16.9 ounce bottle of water approximately every 2 1/2 hours throughout the day (6:00 AM - 8:00 PM. I also fit in some form of electrolyte usually a gatorade. If activity increases or I am out in the heat, I increase the fluids respectively.

This is not a scientific measure, but rather what was recommended to me, and it seems to be adequate. You should watch your creatinine levels, the color of your urine, and listen to your body while you adjust to the fluid intake with venetoclax. I drank water excessively at first, and I think I was washing to much out. It is also important to consider your eating habits in relation to the water intake. Your body needs nutrients also.

For the first three months, know where the restrooms are, and your relief tolerance.

Best of health to you,

JM

Fowey2009 profile image
Fowey2009 in reply to Smakwater

Thank you. Beryl

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